IVF

Some time ago I listened to one of these programmes where people tell their stories of good triumphing over tragedy. In this case it was a woman called Zoe, who told of her experience losing 5 early pregnancies. The consultant, she alleged, had told her not to even start looking for support; there was nothing out there. In response she set up her own helpline: originally called Saying Goodbye, now the Mariposa Trust.

Actually, it’s not true there’s nothing out there. I worked in the field of parental loss for decades, and there are a number of organisations that reach out to grieving families in their need. As a researcher, I myself studied what bereaved parents want and need, and my findings were widely disseminated.

Which all brings me to today’s subject. It’s important not to forget that what we do builds on the shoulders of others; often of giants. And it’s the same in literature. We’ve all benefitted from reading other people’s work – volumes they’ve laboured over, struggled with, paid a heavy price for. Sometimes we aren’t even consciously aware that these writings are impinging on us, altering our way of thinking, touching us at some deep level.

I’ve had a weird sensation of deja vu this week. I’ve been reading One Life by Rebecca Frayn. It tells the story of Rose and Johnny, a young couple who unexpectedly discover a deep desire for parenthood. But unfortunately Johnny is sub-fertile, and Rose is unable to get pregnant even with medical help (IVF, ICSI).

I explored the scenario of infertility in two of my own early novels: Paternity and Double Trouble, so of course I was fascinated to see how Frayn tackled it. I’m not suggesting for one moment that this author has copied my work – her approach is quite different, and I don’t suppose she even knows of my existence! But we are neither of us entering virgin territory, we are both building on what has gone before, maybe our own experiences, certainly those of others who’ve delved into these sensitive areas before us, in factual accounts as well as in the world of make-believe.

And this is where fiction especially comes into its own, because it has a dual effect, touching the heart as well as the intellect. It allows and encourages us to get inside the skin of people like Rose and Johnny, to empathise with their emotions, and hopefully emerge more understanding, more open-minded, more supportive, more compassionate. My raison d’etre. I’m delighted to find another debut novelist entering into my world.

Imagine you’re in your late thirties. You have one child of eighteen months, Mia. Beautiful, much loved, and long awaited. But Mia is suffering from a devastating disease which is damaging her brain and other organs, she can’t eat or sit up or smile, she has frequent seizures. More than that, you know that you, her Mum, carry this disease; you are the one who passed it on to her. She has at most a couple of years to live. Before she even reaches school age you will be attending her funeral. And any future children would be very likely to inherit the same condition and go the same way.

Now imagine a doctor tells you you could have a child who is healthy and free from this terrible disease. Indeed that he could wipe it from your family entirely. For ever.

Now you’re talking! It’s a no-brainer surely. Who in their right mind would say no?

Ahh … well, there are some people – a lot of people actually – who would say to you: ‘No, I don’t want you to be allowed to have this healthy baby. And I’m going to campaign with all my might to stop it being legal for you to do so. I have my healthy normal kids, but you are condemned to heartache and loss because of a quirk in your genetic makeup. And my moral indignation trumps your biological rights.’

Yep, you’ve twigged. We’re talking about mitochondrial diseases. The mitochondria’s the bit outside the nucleus which doesn’t pass on any personal attributes but which helps to produce energy; the so-called power house of the cell. And faults in this area can result in terrible life-limiting diseases. Journalists talk about ‘three-parent babies’, but that’s an emotive and misleading and singularly unhelpful term. Does anyone refer to infants born via artificial insemination by donor in this way? or surrogate pregnancies using donor eggs? and yet they are more three-parent than the mitochondrial variety. Because only a miniscule amount of mitochondrial DNA (less than 0.001%) is from the donor, none of it responsible for the characteristics of the resultant child; almost all of what the infant inherits is in the nucleus, and 100% of that comes from the parental couple themselves.

On Tuesday this week parliament debated whether or not the UK should become the first country to permit mitochondrial donation to eradicate severe debilitating diseases of the mitochondria. Permission was approved. It’s worth noting that the UK has one of the most rigorous regulatory systems in the world when it comes to reproductive medicine and these various stages of consultation and approval are one aspect of that rigour.

Once again, though, up jump the zealots and pontificators and detractors – they’re attracted to developments in the field of fertility like iron filings to a magnet. But this time it’s not just the usual extreme suspects who are objecting, even the Church of England spokesmen on medical ethics are using terms like ‘irresponsible’, ‘an ethical watershed’. Why? Well, at its heart is this factor: the procedure will fundamentally change the genetic makeup of an embryo in such a way that it will alter the inherited characteristics not just of one single individual but of future generations: modification of the germ line. The changes will be passed on; there’s no going back. And who really knows what might result from that? Nobody, that’s who. Nobody can guarantee the long term effects, because we have no data (human at least). None exist. It’s a new procedure (although in reality work has been going on for 15 years behind the scenes in preparation for this moment), but potential increased risks such as premature aging and cancer have been mooted. OK, three scientific reviews have concluded that it is unlikely to be unsafe, but it’s also a fact that scientists do not fully understand the interaction between the nuclear DNA and the mitochondria, which leaves some important questions unanswered.

However, for me this balance of risks and benefits falls into the same category as Lord Saatchi’s Medical Innovation Bill. When the chips are down, when there is nothing but bleakness, tragedy and death ahead, isn’t there a case to be made for well-informed patients/parents to take a calculated risk? We aren’t talking about offering this procedure to the rank and file of childbearing couples after all; only a minority for whom the alternative is too terrible, too heartbreaking, to contemplate. Don’t all scientific discoveries take a leap of faith at some point? Of course the researchers and scientists need to keep working to explore optimal conditions and refine techniques and enhance safety, but that’s true of even the now-common procedures like IVF. If mitochondrial donation is allowed, the children born this way will need to be monitored closely for the rest of their lives, and their children after them. Every step will be scrutinised minutely.

The HFEA Act requires that the embryo be treated with special respect. Quite right too. Few would argue. Misunderstandings are much more to do with the perceptions of what is proposed. So let’s clarify. Scientists are NOT trying to enhance humans in any way, they are not even trying to alter a child’s characteristics. They are aiming to prevent crippling and often fatal diseases and avoid couples now and in the future suffering the incomparable heartache of losing their children in these tragic potentially-avoidable circumstances.

Religious adherents may protest loudly, and indeed in our democratic society, they have a right to their opinions, but what of the Biblical injunctions: Do to others as you would they should do to you, and judge not that you be not judged? Should a Jew or a Muslim or a Roman Catholic or an evangelical Christian or whoever impose their specific viewpoint on Mia’s Mum? On society in general? These are terribly difficult and painful moral and personal issues which affect couples at a very fundamental level. What gives others the right to dictate, I should like to know?

Religious objections aside, a valid sticking point for a lot of people is one of safety and timing. Pre-clinical safety tests have not yet been concluded, and until the results of those investigations are known, it does seem premature to rush through new legislation.

So, we aren’t there yet. Now that the new legislation has passed this week’s hurdle, it comes before the House of Lords on 23 February. If it’s successful then there follows a careful and exact and rigorous process of trials. Caution is the name of the game just as it was with IVF; scientists agonised waiting to see if those babies were healthy. It’s possible the first human trials could begin in October this year, with the first babies born in autumn next year.

The idea that this is some form of malign genetic manipulation is nonsensical, but I did smile at the terse letter to the Telegraph from a man in Aylesbury:

So, when I was deciding which books to sample on the Kindle – just to check whether I really really did want to leap into the twenty-first century – one of the first on my list was Sing you Home. I read it ages ago but it’s taken me till now to get around to posting my comments. Which probably says a lot about my rating of the book.

The story revolves around Zoe and Max Baxter whose marriage is on the rocks after a number of failed attempts to have a baby. (Yeah, yeah, I know. I do bang on about these issues.) Anyway, Zoe finds comfort in Vanessa whose work as a school counsellor overlaps with her own music therapy. They go on to ‘marry’ and decide they want children.

Zoe already has frozen embryos left over from her IVF with Max. Using them seems like a no-brainer. But Max is now a born-again religious zealot, vigorously opposed to same sex unions, and he fights Zoe’s claims through the courts.

OK, some of the issues are my territory but that doesn’t mean I’m bound to like books on these subjects. Indeed, I can be super critical of the way authors deal with medicine and ethics. So, what was my verdict on Sing you Home? Hmm.

It’s the usual Picoult formula:
Major social issues
Multiple voices speaking in the first person.
Lots of amateur psychology.
Big social issues.
A courtroom drama

It has one unique feature:
Accompanying songs, the lyrics of which were composed by Picoult herself. An interesting ‘gimmick’, entirely fitting with the story line about a music therapist who reaches troubled people through songs.

A few amusing/thoughtful quotes to make you smile/wonder:
Max on the effect of infertility on their marriage‘Our sex life had become like Thanksgiving dinner with a dysfunctional family – something you have to show up for, even though you’re not really having a good time … want had become need and then obsession … There was no room in my marriage for me anymore, except as genetic material.’

Vanessa on society’s attitude to homosexuality‘I remember my mother telling me that, when she was a little girl in Catholic school, the nuns used to hit her left hand every time she wrote with it. Nowadays, if a teacher did that, she’d probably be arrested for child abuse. The optimist in me wants to believe sexuality will eventually become like handwriting: there’s no right way and wrong way to do it. We’re all just wired differently. It’s also worth noting that, when you meet someone, you never bother to ask if he’s right- or left-handed. After all: Does it really matter to anyone other than the person holding the pen?’

Zoe’s on school canteen‘It looks like every other school cafeteria I’ve ever seen – a life-size petri dish breeding social discontent, students sorting themselves into individual genuses: the Popular Kids, the Geeks, the Jocks, The Emos.’

Vanessa’s on court protocol‘The clerk scrambles forward to make his announcement as Judge O’Neill strides off the bench, so that we all rise, too, like some magnetic after-effect of his anger.’

I liked:
The insights into what music therapy can achieve with the depressed, the dying, the dementing.
The sympathetic and empathetic principal female characters.

I disliked:
The stereotypical portrayal of bigoted right-wing Christianity.
The pseudo-psychology everybody seems to indulge in.
The occasional misuse of medical terms (or maybe it’s simply American shorthand).
The anomalies in the formatting that crept in during conversion.

So, a mixed bag. Not a patch on House Rules.

Oh, just before I go, if you’re weighed down by the stress of Christmas preparations, or feeling jaded by lack of daylight hours, or in anyway down in the dumps, I recommend you go to dovegreyreader‘s post for Saturday December 10. It’s called Security knitting alert …start casting on everyone and it’s sure to bring a smile to your face.

It’s odd how when your mind is steeped in a particular subject you see related things everywhere, isn’t it?

As part of preparing for the publication of Saving Sebastian I’ve been thinking a lot about fertility treatments, the rights and wrongs, benefits and risks, should we-shouldn’t we? Because as well as working on the book itself, I’ve had to bend my mind to the assorted peripheral tasks that dog any writer – publicity and marketing, updating my website, events, that sort of thing. Not nearly as much fun as the creative writing but just as necessary, I’m afraid. Anyway, I was deep into drafting questions for bookclubs, and challenges for teachers and students of related subjects, when lo and behold, two articles jumped out at me.

One was a news item saying that a Brazilian fertility expert – the very one who helped the famous footballer, Pelé, become the father of twins – is suspected of having deceived patients at his Sao Paulo clinic into raising children who were not biologically their own by implanting other couples’ embryos to boost his success rates. Wow!

And why did this leap out and sock me between the eyes? Because in Saving Sebastian, a Nigerian couple have twins through IVF – one black, the other coffee coloured – and there’s a big old stooshie going on in the fertility centre to establish just what went wrong. Was it deliberate? Was it a genuine mistake? Is there something else lurking in the undergrowth? Too bad real life beat me to it, eh? If my publisher had stuck to the original publication date of 1 May my novel would have been out a fortnight before this Brazilian story broke. Heigh-ho.

The other sucker-punch was by Daily Telegraph columnist, Dr Max Pemberton (16 May). He starts by saying he thought long and hard before writing this particular article because he knew he’d attract condemnation. OK, I’m listening, Doc. The gist of his argument – please note his not necessarily mine (I want to keep my powder dry meantime!) is
– the NHS is strapped for cash
– hard decisions have to be made about how to use limited resources
– there is now an expectation that the NHS will provide fertility treatment on demand and the belief that everyone has a right to be a parent
– childlessness is not a disease but a grief based on people being unable to have what they want
– in these straightened times life-threatening and debilitating diseases should take precedence
– therefore, he concludes, ‘IVF is a luxury the NHS just cannot afford‘.

And the relevance of this piece? Well, in Saving Sebstian, Yasmeen and Karim Zair are fighting to have a baby by IVF who is the same tissue type as their son, Sebastian. The little lad has a rare blood disorder from which he will die if he doesn’t get stem cells from a saviour sibling. And already he’s having punishing treatment to keep him alive. At four years of age … imagine! Should they be allowed to have this treatment? There are plenty of people opposing them. What do you think?

Maybe reading the book will help to crystallise your own thinking so you can agree or disagree with Max Pemberton more logically. But in the meantime please do have your say on my blog if your dander is up, steam is exploding out of your ears, and you feel like adding to the debate right now! You can always publish an addendum or a retraction later. Remember …

The man who never alters his opinion is like standing water, and breeds reptiles of the mind (William Blake).

I couldn’t have dreamed up a better precursor for my forthcoming book Saving Sebastian, due out on 1 July. But honestly, I hadn’t so much as whispered in the ear of the BBC.

The documentary, So What If My Baby Is Born Like Me?, went out at 9pm on 19 April on BBC Three, but the main players were also interviewed on various newsy programmes. The story featured Jono Lancaster, and was both poignant and challenging. Jono has Treacher Collins syndrome, which essentially involves deformities of the face and ears, but normal intelligence. And Jono’s intelligence certainly shone through, as well as his honesty, courage and thoughtfulness.

The thrust of the programme was whether or not he should father a child naturally with his girlfriend of four years, Laura. They both want children, but Treacher Collins is hereditary, and they run a 50/50 chance of having a baby with the same condition. But no one can predict how severely it would be affected. As well as the distinctive facial irregularities, some children require tracheostomies and tube feeding, some are profoundly deaf, some have cleft lips and palettes. In the course of considering their options, Jono and Laura met a little girl, Maisie, and saw firsthand what such anomalies mean to parents. And to the child.

And Jono knows only too well the reactions anybody with the condition will encounter. He’s even been vilified for daring to have a relationship with a pretty girl! And Laura is indeed very attractive, as you can see. Jono’s own biological parents were so appalled by his appearance that they rejected him from birth. He was taken in at two weeks of age by an amazing woman who’s fostered over twenty children. She admitted that Jono had occupied a very special place in her affections and she’d formally adopted him. Watching them together was a delight.

But before you condemn his natural mother, ask yourself, how would you react to being handed a baby looking so different from your expectations? Or walking down the street with a child whom everyone stares at? Take a look at these photos and imagine the scenario; ask yourself the questions, if you dare. I studied dozens of them and I confess I didn’t like the answers.

However even Jono’s adopted mum couldn’t help him with the quandary he was in now. As she wisely said, you might think you know what you’d do in these situations, but no one can say for certain what they would do in reality. You can’t know until it happens.

It’s a tribute to her love and acceptance and sound common sense that Jono’s instinctive preference was to adopt. Laura though, wants her own child. In an effort to work though the possibilities, they seek advice and counselling; they visit families who’ve faced some of the same dilemmas. One option they have is to go for IVF with PGD – essentially this involves creating an embryo using their own sperm and eggs, then testing it to see if it carries the defective gene. Jono seems initially to be labouring under the mistaken idea that the faulty gene would simply be removed. When he finds that the whole embryo would be destroyed, he’s morally outraged. For him this is ‘an insult’, ‘disrespectful’ to all people with a deformity or genetic disorder. The fact that he himself wouldn’t exist if this facility had been offered, gives his outrage special emphasis and extra weight.

Listening to this young couple grappling with the dilemma was peculiarly arresting even for battle-hardened me. Something so natural as having a child is for them a major issue with endless questions, doubts and fears attached. Jono’s ‘morally wrong’ argument is a massive stumbling block to progress, but in the end their conclusion is that, for them, it feels right to go for IVF with PGD, to have a child without the defect. ‘Morally wrong’ for Jono it might be, says Laura, but even so ‘it’s right’. ‘Definitely right’ for the child, Jono concedes.

The scenario in my novel is different, though many of the issues and questions are similar. Sebastian is four years old, and he has a rare blood disorder. But he’s stunningly beautiful to look at. His parents are considering having a baby by IVF with PGD to save Sebastian’s life. They too have reservations … But in this case, I’m not going to tell you the outcome!
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